For those of you with endometriosis...

[Anonymous]

I was diagnosed with Stage IV this summer via laparascopy. My doctor did not remove all of the endometriosis.. I don't really understand exactly what happened, but I think he cut away at the cyst and drained it but did not remove all of it.. if that makes sense. I developed another cyst shortly after surgery (1 month) on the other ovary. I have since gotten 2 second opinions, one from a local ob/gyn and one from this great endometriosis specialist in Atlanta (Dr. Sinervo at the CEC). I really want to get excision surgery from the CEC but it looks like that is not going to be possible because of my insurance plan - no out of network coverage.

I am trying to figure out who to see in the DC area. I have heard so much about excision, and now many ob/gyns are saying that they do it, but I really want to see someone who is very good at what they do- who specializes in endometriosis, like Dr. Sinervo in Atlanta. Is there anyone in the DC area who specializes in endo?? Or a best bet to go to? I am having so many stomach/digestion issues and just want to get this taken care of. I was told that I probably have a 1-3% chance of conceiving naturally right now (awesome) and if excision is successful, that will bring up my chances to over 50%.. then if I went to IVF, my chances would be 85%. Any recs there, either? I'd rather go to someone who has experience with endo and IVF.

Thanks!

[Anonymous]

Well, it's been 10+ years now (before excision? - mine was cut out - Stage III), but Shady Grove is where we had finally had success. I ended up having 2 surgeries and a few miscarriages before delivering 2 healthy babies at 35 and almost 38 years of age - after trying since age 30 to get PG.

You really should be able to find someone in the area rather than spend the extra $ to go to Atlanta seeing as you will probably have to do IF treatments as well.

There was a book about diet from an English author I found useful - I'm sure you can find it if you google. It dealt specifically with Endo, IF and diet to get PG. Basically for number 2 (book didn't come out til after number 1 was born), I ate a vegan, wheat and sugar free diet, no dairy as well. Tough but worth the effort in the end. Basically you want to avoid an inflammatory foods.

I wish you the best of luck.

[Anonymous]

Be very careful. My endo (laser) surgery ruined my ovaries. The month before surgery my FSH was 5.5. The month after it was 17+. Now we're doing donor eggs. In addition, my endometriomas were back within 6 weeks of the surgery. If I had it to do over again, I would go to the best, most experienced person in the country and pay out of pocket, or skip surgery altogether. The bottom line is it hurt me more than it helped.

Also, be aware that there are other fertility problems associated with endo besides the obvious (tubal blockages, etc.). Women with endo are at a substantially increased risk for immune problems and other implantation disorders (like beta-3 integrin deficiencies) that IVF can't fix. No one told me this. Doctors have a tendency to push surgery and IVF as the end-all be-all in endo treatment. Just something to keep in mind.

I'm sorry--I wish I could be more positive, but my experience with endo (stage 3) and doctors who claim to treat it has been very negative.